Updates on Evan

No surgery.

Posted by: Myra
Date: December 31st, 2009

We spoke with the surgeon around 7:30 a.m. She showed us Evan's MRI scans from yesterday and explained that due to increased tumor growth the endonasal approach was no longer an option. To say we are disappointed would be an understatement.

WE WILL KEEP FIGHTING! Proton Beam Therapy, chemotherapy, whatever it takes.

Thank you so much for all of your prayers and good thoughts. You'll never know how comforting they've been for us during some very dark days.

With love and hope,
The Hoffmans

 

Pittsburgh.

Posted by: Myra
Date: December 30th, 2009

Yesterday we had a nearly two-hour long consult with Evanís surgeon, Dr. Elizabeth Tyler-Kabara, here at Childrenís Hospital of Pittsburgh. She gave us some history on the endoscopic endonasal approach. They pioneered the surgery on adults 10 years ago, and have been successfully doing the procedure on children for the past five years which equates to about 130 kids. Of course, not all of those kids are rhabdomyosarcoma patients so there isnít a long history of cases to point at and compare. She said this surgical approach is still considered very new in the pediatric oncology world and there probably will not be a protocol (or clinical trial) written for it for another year or so. So, Evan is definitely ahead of the curve and in our minds a truly brave warrior paving the way for other kids.

She told us in Evanís case the team of surgeons (there are three) plan to do a total resection which means removing the entire tumor and some margins surrounding the tumor. In order to do this they will likely have to sacrifice the right carotid artery. She told us there is no point in doing a partial resection or debulking (making the tumor smaller) with Rhabdo. You have to get the whole thing or you donít do surgery. Even if they take out the whole tumor, he will still need chemo and radiation following the surgery. You canít imagine how stressful this conversation was, especially for Evan. After we left that meeting we made a beeline for the nearest ďAppleĒ store to cheer him up. It helped a little.

Today they performed a three tests to prepare for tomorrowís surgery. They did a balloon angioplasty on Evanís right carotid artery to see how the rest of the vessels would respond with that one blocked off. While they had the balloon inflated they did a CT scan of his head and neck using a special heavy contrast to get pictures. They even woke Evan up during the procedure to do some neurological testing and then put him right back to sleep. After those two tests they did another MRI of the head.

The last time Evan had anything to eat or drink was 9 p.m. on Tuesday night...as of 9 p.m. tonight he still had not had anything. It was a very, very long day and evening. He was in a great deal of discomfort (groin pain related to the angioplasty catheter) by the time they got him situated in his room tonight, but they canít give him anything stronger than Tylenol because of the impending surgery in the a.m.

If any one of those three tests from today throw up a red flag, they will not do the surgery. We wonít know the results from todayís tests until probably 7 a.m. tomorrow (Thursday).

Thank you for all of your wonderful messages. Now more than ever we need your prayers and positive energy. We know God pointed us to Pittsburgh for a reason. We need all the stars to align for our most precious boy, our Evan, whom we love more than life itself. Lord, hear our prayers.

 

Surgery scheduled for December 31.

Posted by: Myra
Date: December 21st, 2009

After my rant last Wednesday the power of prayer took over and Pittsburgh called on Thursday to say they were trying to arrange for Evanís surgery on December 31. But, they needed to coordinate a team of doctors, so if they couldnít make it work that day it would be some time the first week of January.

That put us in a dilemma. Not knowing whether it might be another two or three weeks until the surgery, we felt compelled to do something. Evanís headaches were increasing. We decided to do at least one round of chemo prior to the surgery. Even if the tumor only shrinks a millimeter it would help alleviate his pain and help with the margins for surgery. So, Friday Evan had an IV infusion of chemo and heís also taking a daily chemo pill. We can stop the daily pill at any time should it be decided that itís causing more harm than good.

Itís quite a delicate balance - we donít want the chemo to drop his counts and hurt his appetite, but at the same time we donít have the luxury of not doing anything.

Today, Pittsburgh called and they confirmed the surgery date for December 31 (yes, New Yearís Eve). Praise the Lord. Now, if the insurance company cooperates all will be a go.

Family members have volunteered to house sit for us and keep Hershey company, so no worries there.

From almost the moment Evan was diagnosed in June 2008, Jeff and I have researched the Internet (and newspapers/books/magazines) for anything and everything to do with Rhabdomyosarcoma, pediatric cancer treatments, radiation, alternative medicines, surgeries, followed similar stories, etc. Never stopping even post-treatment. Looking, searching, hoping. And, then, out of nowhere pops up this surgery at UPMC. It just has to be the answer, doesnít it? We pray so.

When you gather with your family this week Ė cherish every moment.

Godís blessings to you this Christmas,
Myra, Jeff and Evan

 

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